Post Stem Cell Surgery – Pics & Video

Alright, another week post surgery and I’m feeling so much better than last week’s post. I have much more range of motion in my neck. Even if I do something that aggravates it, the pain is much less intense and only lasts a short time. It’s still a little difficult moving upper body forward and back but I can do it. I can also rest on my side and just move better in general. It’s great!

If I had to complain about something it would be this one scab on my neck that’s taking its time coming off. There is no sign of infection, we are still cleaning it twice a day and putting vitamin E oil on it. I could force it off and not have any problems but I know that could make it scar differently so I’m trying to be patient. I want it off also because it’s keeping me from getting my hair cut. I just don’t want to go in with a fresh scar and a scab. If roles were reversed, I wouldn’t be happy. I think other clients would be unhappy too if they saw it. So I wait.

I go back to Emory next week for more tests. My blood will be checked to make sure the immunosuppressant drugs I’m on post surgery are at the right levels. I’ll have another full MRI of my brain and spine. I’ll be glad when that’s completed. It’s a long one. Most future MRIs will be shorter because a smaller area will be scanned. There will be other testing and talking to closely monitor how I am doing. I feel positive about this and future appointments and outcomes.

I have told Dr. Glass and my study Coordinator, Jane, what I’ve noticed in myself. I have to keep in mind I’m still very early out of surgery and I don’t want to start saying things that I’m not absolutely positive about yet. I must tell you though, I do feel positive and I am experiencing positive changes. If I had every treatment option available laid out for my choice, even the power to switch it up a bit, I would with no hesitation choose exactly what I had. I would without hesitation choose to have stem cells injected directly into the gray matter of my spinal cord, and only the specific stem cells from Neuralstem, Inc. I also wouldn’t trade for anything my ALS specialist, Dr. Jonathan Glass, professor of neurology, Emory School of Medicine. He is director of Emory ALS Center and principal investigator of Emory clinical trial site. His dedication to finding a treatment and ultimately a cure for his patients is so apparent. I know I’m under the care of one of the best ALS researchers in the world. Neurosurgeon Nicholas Boulis performed my surgery and also developed the device to safely inject the stem cells into the spinal cord. Even though at least one other surgeon has used what he created and I’m sure there are many surgeons competent to use it, he created it and boldly went where no other surgeon had been before starting in the phase I trial. That helps a lot with the fear factor along with meeting and speaking with him prior to surgery. His casual confidence and extreme knowledge he so willingly, eagerly shares of any aspect of the procedure one can possibly think to ask, while at the same time not sending any signals of intimidation puts him as number one choice to perform my surgery. I received exactly what I would have chosen. I’ll be forever thankful that I was chosen as a candidate for this and after meeting all criteria was able to be a part of what I believe is the beginning of great things ahead for ALS. I’ll be more specific with my outcome in time. I have no doubt it’s positive, I just want to give more time and make sure everything I claim is right. Stay tuned.

I had to give this some thought and decided to do it. My husband recorded me a little in the hospital on the third day. I would be interested in seeing what a person is like on day three after this procedure so I figured others would too. I’m not going to lie, my main hesitation is because I look awful and well, very fat. I know many people say they wouldn’t care, most will say I shouldn’t. It is how I feel. I’ve gained a lot of weight since being diagnosed with ALS. More than needed and I don’t like it. I’m not concerned with whether or not it should bother me. Fact: It does. In fairness I’m also still very swollen all over in the video. The swelling almost masks some of the facial muscle changes and hides the normally obvious atrophy seen mainly in my right arm and my fingers look more normal to me. There, I can be positive about how my looks have changed. I remember shortly after waking from surgery hearing family talk about how swollen I was and lifting my arms enough to see my very swollen hands, then my brain went off into the great Pink Floyd song, Comfortably Numb. The part about having a fever as a child and hands felt like two balloons. They did look like hospital gloves blown up to full capacity. Back to the topic, we all know I don’t like the way I look here. I’m putting that aside to give a glimpse of 3 days post surgery. I’m also showing pictures fresh out of surgery and a few more. I chose to put this out there for basically the same reason I put my daily pic on my website. I did that to spread awareness of ALS by showing the long-term progression of ALS. I always come to the conclusion raising awareness about ALS is much more important than how I look. I just allow myself a moment to whine about it here. It helps. I already feel much better. Now let’s get to spreading awareness! I hope this interests you as much as it would me. I remember him recording, but it’s a vague memory. I’ll probably put the pictures and video somewhere on the website too for easier access as time passes. Here they are.

fresh out of surgery

4 days post surgery

5 days post surgery

6 days post surgey

My nurse first braided my hair and my husband learned and kept it up for me since

8 comments:

I do appreciate the words but I don’t think of myself as a hero. If I’m a hero, so is everyone living with ALS and all caring for a person with ALS. I think lucky is more fitting. I did what almost any of us would given the opportunity to participate in this very limited study. Hopefully this will be an option for all sooner than later. We need a treatment/cure yesterday! On behalf of us all, thank you for the compliment.

Yes, I have seen both of these Georgia men. I’ve had positive progress recovering from the procedure and am feeling great about the results even though, at this point, I’m cautious about making definitive claims on my ALS progress. I want to be positive before I give specific statements on any improvements I have as I am only four weeks post surgery. I will keep updating my experience and outcome here on my blog. Ted has been a great ALS advocate since his surgery in the phase 1 trial. John is less known and as you can see, walking proof to have hope about this ongoing clinical study.

I didn’t know and was nervous to click the link. I had no idea what he had to say about me. By the end I was in tears. It was nice to know that he has read my blog and really nice to have him compliment me. He made points I feel I haven’t been successful expressing. It’s one thing to write about feeling grateful to be in the study, which I will forever be. It’s hard to then write about all the stress it brings. He brought up how people often don’t think much of what we’re willing to risk and sacrifice because we’re seen as having nothing to lose. As he mentioned, we are all in relatively early stages. We have a lot to lose. Yes, we know how ALS ends if we don’t take risks and that is a deciding factor, but we still are risking the loss of precious remaining abilities and time we would lose if something did go wrong. Don’t count out a person in late stages either, even on a tracheotomy, as having nothing to lose. Many are living full, productive lives.
Speaking of myself, even though it has never left my mind of how grateful I am to be in the study, before surgery there was a lot of fear and anxiety for me as well as my family. Going to clinicaltrials.gov will tell you the inclusion/exclusion criteria but it can’t convey the actual experience of it all. Every Emory visit, every test, the procedure itself, and all that comes after it. As supportive as my study team is to me, for good reason, they never let me forget the seriousness and risks of this study. There’s so much more to say but this reply is turning into a blog. Thank you for the link, it is an honor to have the CEO of the company, who has put so many years and so much effort into making this a reality for ALS patients write complimentary about me. I didn’t get my blog out this last weekend. This really motivates me to write and continue sharing my story with everyone. Thank you for the link.